Son's heart defect spurs Shannon Cogan to act

Colt Cogan is smaller than his 6-year-old brother, Cade, but in many respects, they are kindred spirits.

The dark-haired sons of WAVE 3 TV anchor Shannon Cogan are twins who buddy around together at home like Batman and Robin.

Their parents have to remind them to quiet down as they run through the spacious house, near Seneca Park, playing together and yelling like typical kindergartners.

Colt gets down on the floor to draw and Cade joins him. Later, they don colorful, super-hero capes, sewn by their grandmother, to impress some visitors.

"You look at the two of them together and sometimes your mind goes off and you think, 'Oh, my gosh, I can't even imagine the one without the other,' " said the boys' father, Kendall Cogan.

But a heart condition and a second life-threatening emergency threatened to separate the boys shortly after birth.

"I just started praying like I had never prayed before, and I said, 'Please, God, save him. Please, God, save him,' " said Shannon Cogan, thinking back to the day Colt went into cardiac arrest.

To this day, "it's so hard to think about that moment."

Shannon Cogan has become an advocate for congenital heart defect awareness and research because Colt was born with a condition called total anomalous pulmonary venous return or TAPVR. It's a birth defect of the heart in which the veins bringing blood back from the lungs don't connect to the left atrium like they should, according to the U.S. Centers for Disease Control and Prevention.

"Instead of the oxygenated blood going to the left side, where it needs to go, it was going to the right side," said Dr. James W. Boone, a Louisville pediatric cardiologist with Pediatric HeartCare Partners. "The way that presents, typically, in children is that when they're first born their oxygen levels are lower because there's not as much red blood going to the body as the body needs."

The family was living in Florida when Colt was born with the defect. Before the twins' births, no abnormalities had been picked up on ultrasound, and both boys were of good size (Colt was 6 pounds, 14 ounces; Cade was 8 pounds, 6 ounces).

But right off, Colt's "color just wasn't right; he was a little bit bluish," Shannon Cogan said. Then while being cleaned up, he turned bright red.

After several hours had passed, the Cogans learned that Colt had a heart defect when a doctor came to them around midnight.

"It was a little surreal listening to him try to explain to us what was wrong with (Colt's) heart ... using a handwritten drawing and pen," Kendall Cogan said. "Shannon was starting to break down and cry, and I think I was in shock."

At 2 days old, Colt went through a five-hour surgery to repair his heart. "The heart was fixed; the heart looked good," Shannon Cogan said.

But about four weeks later, while Colt was still hospitalized, something went wrong.

Shannon Cogan was singing "Twinkle, Twinkle Little Star" to console Colt while his nurses were doing a routine procedure, and "he just stopped crying and opened up his eyes and there was nothing there," she said. "He was gone."

Alarms started going off and Shannon Cogan ran out of the room, screaming for doctors to help her son, who had gone into cardiac arrest.

"It took 20 minutes for them to get his heart going again," Shannon Cogan said. "And I still feel nauseous when I talk about it."

In order to save Colt, "they had to reopen his chest and … manually pump his heart to get it going again," his mother said.

After 20 minutes, she was told, "Well, his heart is going, but it's 50-50" as to what his condition will be.'"

Although Colt survived the crisis, he sustained brain damage, Shannon Cogan said.

Speech difficulties, partial hearing loss in both ears and developmental delays are among the hurdles that he contends with. More disabilities could become apparent as he grows older.

"I think most of the problems are due to the cardiac arrest," said Boone, one of his current doctors. "Most children who have that (TAPVR) repair and don't have any complications or problems do very, very well and don't have any long-term issues from that."

But for Colt and his family, life is unpredictable. "I have to take each month as it comes and that's been a huge lesson from this and, obviously, to be grateful for every moment," Shannon Cogan said.

Because of her son's issues and loneliness that she felt after he became ill, the broadcast journalist has tried to raise awareness about congenital heart defects to help other parents and to help support research.

Congenital heart defects are the most common type of birth defect and affect nearly 1 percent of births a year in the United States, according to the CDC. TAPVR occurs in about one out of 10,000 births, Boone said.

Shannon Cogan said: "I think that if more research is done, perhaps, they can fix this in utero, give children a better chance at having a successful life." Heart defects are "something that the child is born with and it's fixed, but they sort of deal with it for their (entire) lives."

In spite of his medical troubles, Colt is a happy, creative boy. He attends school at the Heuser Hearing & Language Academy in Louisville and "he loves art," Shannon Cogan said. "He can sit and draw for hours."

Some of Colt's work was featured in a social media campaign by the heart association earlier this month. In the campaign for Congenital Heart Defects Awareness Week, the 6-year-old was highlighted as a "heart hero."

He will be honored again in September as king of the association's Kentuckiana Heart Walk, and WAVE 3 will help sponsor the walk, said Shannon Cogan, who has blogged about her son's story for the association.

"It's really sweet to see a Louisville family that is recognized on a national level for their work to raise awareness for CHD," said Matt Rountree, a spokesman for the heart association.

In solidarity with Colt, students at Heuser recently made heart hero capes, and his brother, Cade, raised money for the association through a jump-rope campaign.

Cade is protective of his brother and seems to have a special understanding of his needs, Kendall Cogan said. "He just gets it; he really tries his best to make sure his brother doesn't have too much of a tough time."

Reporter Darla Carter can be reached at (502) 582-7068 or on Twitter @PrimeDarla.

HEART BALL

The American Heart Association's 23rd Annual Louisville Heart Ball will be Saturday at the Louisville Marriott Downtown. The evening focuses on congenital heart defects and other childhood issues. Tickets are $500; tables of 10 are available. For more information, call (502) 371-6023, or go to LouisvilleHeartBall.heart.org.